Report lack of care to who...where????

[BlueKat]

Something crazy happened to me just the other day. I was getting my Venofer, which I've been on for a long time, never had a problem with it before. Well, this time the RN must have just been lazy and he pushed it in fast; which we all should know is a big NO-NO! As it can cause "Red Man's Syndrome" in some patients. Me being one of them. -.- (I also get RMS with Vanco and Genta.) Anyway, so I started feeling very flush and itchy and my face was red as a damn beet! The Nurse Practitioner was there that day and was all, "Lexi, what's wrong? You don't look so good." So I told her I felt like I was having an allergic reaction to something. She said right away it looked like someone pushed the Venofer too fast.

Well, the RN who pushed it was standing right here and he goes, "No, I pushed it slow like usual." In unison (I kid you not) one of the techs and myself go, "No. You pushed it fast. I watched you!"  It was kind of comical, really. But the RN still insisted he pushed it slow and tried to say I was not feeling good because they were taking too much fluid. Whatever. Surprise, surprise he hadn't even charted anything. So anyway, they gave me some Tylenol and Benadryl to help with the reaction and all was well.

Any IV iron preparations should go over an hour, with some sort of bard or med pump. I've went round and round with a nephrologist on this, who insists that 15 min. is just fine. I had 30 yrs experience in critical care with non dialysis pts. Infusing iron too fast will in some cases make their Blood pressure non-existant. On occasion the BP may not drop for 30 to 60 min following the iron infusion. When it does, it's dramatic & stays down for awhile. I've never seen the "red mans syndrone". I've never stood or sat down & pushed IV iron. If your hemodialysis facility is pushing all Venofer (iron surcose), they should push 1 cc at a time over a minute. Come back 10 to 15 min. later & push another cc. That should not cause a problem.
                                               BlueKat

[plugger]

I posted about Arlene Mullin and Dialysis Advocates a few posts back in this thread:

http://ihatedialysis.com/forum/index.php?topic=11853.25  (2nd from the bottom)

I just wanted to mention Arlene has been posting more patient stories: http://dialysisadvocates.com/patient-stories/

[plugger]

And now there is a message board: http://dialysisadvocates.com/discussions/

[Raininggalaxies]

I read the first post on this topic. My grandma does RAI for her dialysis and they are nice but sometimes lack of care. One day my grandma went to do her dialysis and she has problems with her bp. That day she was moaning because he didnt feel good. She said she feels like she's gonna faint or die. They said oh no you look good! Your ok! 5 minutes later she feels even worse she says to the nurse "nurse I'm gonna go to sleep I feel no good." They look at her bp readings and he bp is dropping by the second! The nurse shouts to the other nurse to get extremely salty soup for my grandma I eat. I don't think that's right they waited till the last minute. RAI has posters all over to complain and I told my grandma if that ever happens you need to make a complaint.

[fbm2lsm]

Good work on reporting., that amount of time in inexcusable.  With dialysis we have found time is a very valuable commodity.   My husband is the patient and we would make his nephrologist aware.  We are lucky that she wants him to be as healthy as possible.

[Simon Dog]

I usually catch errors before they are made, but have had two.  Vanco was administered via a 20 minute manual drip rather than 60 minutes as requred to avoid risk of redman syndrom.    I addressed the problem by talking to the clinic director who is my doc.   

The other was use of a 160 rather than 180 filter when I was a visiting patient at another clinic.  When I pointed out the error, I was told "policy is all visitors get the 160".  I verified the chain I used has no such national policy, and am pursuing the matter through the chain's formal complaint process.

[NDXUFan]

From my experience, social workers are not there for the patients.

Simply outrageous treatment G-Ma.  You need to find out who's in charge of the unit (but not in there).  Put it in writing detail by detail. Cc it to the director but address it to her boss.  Cc it to the social worker as well.   Her job in part is to advocate for patients.   I've never heard of not being hooked up immediately once you've got the needles in your arm.  I also completely agree with Stacy about trying to find somewhere else to go.  Where's nursewratchet on this for advice.  We all know she'll be pissed.  Since you did home hemo for a while, would they ever let you hook yourself up and turn up the pump etc.?  I'm fuming on your behalf right now.   I'd be thinking news reporter right about now but I tend to get a little tetchy when riled.

[cattlekid]

Agreed 100%.  In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance.  Both were completely useless for me and my situation.

From my experience, social workers are not there for the patients.

[NDXUFan]

The only time that the social worker helps the patients, it is to line the pocketbooks of the clinic.

Agreed 100%.  In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance.  Both were completely useless for me and my situation.

From my experience, social workers are not there for the patients.

[NDXUFan]

Always remember, it is about the earnings of the company, not the patient, never forget.

Agreed 100%.  In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance.  Both were completely useless for me and my situation.

From my experience, social workers are not there for the patients.

[PatDowns]

Agreed 100%.  In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance.  Both were completely useless for me and my situation.

From my experience, social workers are not there for the patients.

Both the social worker and dietitian at my clinic round at least weekly with the nephrologist.  The SW is relatively new to dialysis, but seems to make the effort when patients need her help.  Our clinic has a separate employee who handles financial matters.

[NDXUFan]

Agreed 100%.  In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance.  Both were completely useless for me and my situation.

From my experience, social workers are not there for the patients.

Both the social worker and dietitian at my clinic round at least weekly with the nephrologist.  The SW is relatively new to dialysis, but seems to make the effort when patients need her help.  Our clinic has a separate employee who handles financial matters.

I am glad to hear that, because, in seven years on dialysis, that is not my experience.

[noahvale]

*

[IGould]

I know its not simple while struggling ESRD, but please try and discover a new Dialysis middle (non-profit if possible, they seem to have the best care) and get your proper care handled.  None of the people have the right mind-set for looking after for sufferers.



Edited: Link removed - okarol/admin

[DeadAlive]

The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.

Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
       I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
       I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
       There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
        I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
       I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
       I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
       Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!

..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.

I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.

29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.

[kristina]

The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.

Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
       I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
       I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
       There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
        I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
       I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
       I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
       Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!

..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.

I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.

29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.

Dear DeadAlive, I do hope your transplant is still successful and you are still "with us" and carrying on.
Like yourself I have had unfortunate battles with terrible NHS-medics as well and can understand where you are coming from...
Good luck wishes from Kristina.

[Charlie B53]

I don't kkow if there is, but there should be laws, measures, policies of some sort, that treatment, or more correctly the lack of CARE in treatment, should be actionable.  At the very least termination of employment and a ban on future employment of that type.

Patients cannot be mistreated,  staff cannot be allowed to mis-treat patients.

I join Kristina in Praying this Member report a successful transplant and doing well.  He certainly has had a very stressful time which had driven him to the point of considering suicide.

This makes me wonder, if he was abused this bad, how many other have been, and still are, abused by this Clinic?

Have there been suicides from this abuse?

This posting needs to be brought to the attention of a Patient Advocate of NHS.  Hopefully it will create such a stir that this type of mis-treatment will be investigated and dealt with.

Take Care,

Charlie B53

[kristina]

I don't kkow if there is, but there should be laws, measures, policies of some sort, that treatment, or more correctly the lack of CARE in treatment, should be actionable.  At the very least termination of employment and a ban on future employment of that type.

Patients cannot be mistreated,  staff cannot be allowed to mis-treat patients.

I join Kristina in Praying this Member report a successful transplant and doing well.  He certainly has had a very stressful time which had driven him to the point of considering suicide.

This makes me wonder, if he was abused this bad, how many other have been, and still are, abused by this Clinic?

Have there been suicides from this abuse?

This posting needs to be brought to the attention of a Patient Advocate of NHS.  Hopefully it will create such a stir that this type of mis-treatment will be investigated and dealt with.

Take Care,

Charlie B53

Thank you Charlie for your kind concern, I appreciate it very much.
... If you have a look at some of my "older" writings here on IHD, from when I first joined, it becomes clear, that DeadAlive is unfortunately not alone to endure terrible problems with NHS-medics and NHS-staff...
... Fortunately, as a happily married person in a steady relationship, where my husband and I support each other and can talk about practically everything with each other, I am also - by my very own character and attitude - luckily not the type of person to ever consider suicide ...  But I can assure you that my husband and I have gone through terrible and some long-standing battles with certain NHS-medics, especially since I suffer from very rare inherited disease-variations of SLE/MCTD etc., for which there is hardly any real medical specialist, but ever so many medical "wannabe's" who claim to be specialists for rare diseases like mine ... The point of their claim is, of course, that real NHS-specialists always receive a much bigger pay package at the end of the year ... But these medical "wannabe's" may create real medical problems for NHS-patients suffering from rare diseases, because NHS-medical specialist "wannabe's" are often not medically able or qualified to really medically look after rare-disease-patients  ... and unfortunately that often creates a chain-reaction of real medical catastrophies for such victimized patients ...
... Let's hope DeadAlive enjoys his successful kidney-transplant for many years to come and hopefully he/she has a chance to get over the terrible medical traumas with NHS-medics he/she had to endure before the transplant...

[Charlie B53]

I do not doubt that buried deep within my WASP upbringing in middle class America that I still have some roots of Bias.   I know this, acknowledge the possibility, and WATCH for it, to make sure that I do NOT use it to judge anyone. Or attempt to discriminate anyone one from everyone else that should be entitled to the Freedoms and Rights that we ALL should have.

I consider myself somewhat educated, while not a PhD, or a Masters, And I dropped before getting my Bachelors, but not for a lack of credits.  I have excess credits.  I was a student bum/genius, for a number of years.

But in this day, with so many people, supposedly educated, I do not understand how some can still be so barbaric, as to display hate and contempt for another.   This drives me absolutely nuts.   I was taught that we were ALL granted these God Given Gifts, yet so many squander them.

I better quit right here, this could get pretty long otherwise.  I just wanted to give you an idea where My head is at.

Take Care,

Charlie B53

[kristina]

The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.

Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
       I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
       I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
       There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
        I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
       I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
       I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
       Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!

..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.

I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.

29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.

Guess, what made me to come here again :  I went recently through a most frightening and horrifying experience with a "witch in a wardrobe" and that experience brought me here to research more and when I started to read DeadAlive's experiences with a main sister at his dialysis-center he called "wicked witch", I realized instantly, that it might be the same "witch in a wardrobe" I also had the misfortune to come across recently.
I am not surprised that he even considered suicide, since she was so wicked to him and she was even deliberately wearing his spirits down to such a low degree and, of course, she knew, that there was no way out for him, poor soul : he was alone and isolated at the time when he had the misfortune to come across her wickedness and he needed dialysis three times a week and she was there ... probably waiting ... and ... my good luck, when I had the misfortune to come across her horrible wickedness, was, that at the time I had a witness, who was, like myself, taken by surprise and, like myself, was also left to feel totally horrified and stunned...
It feels strange to re-read about DeadAlive's encounter with her wickedness and it also gives me a better chance to "steel myself" as best as I can from now on against her sadistic and horrible wickedness ...
Just imagine : DeadAlive felt forced to take himself off the dialysis-machine at the dialysis-center without any assistance, whilst he also felt seriously unwell and it must have been absolutely horrific and terrifying, when her wickedness left him in such a terrible desperate situation... 
I do now understand perfectly, where he is coming from. Unfortunately our NHS-health-system is enormously huge and because of that, there is unfortunately "some space left for very bad apples". 
But : needing dialysis three times a week and being at the same time on the kidney-transplant-waiting-list, leaves unfortunately hardly any chance to complain about such a "wicked witch", because the same dialysis-technicians (plus the "wicked witch") also work in the transplant-department on and off in the same district ... So, if a kidney-waiting-list-candidate in their district thinks seriously about complaining about such a "wicked witch" at the dialysis-center in that district, they have to seriously re-think again and consider, that with a complaint, they might create a chance for the "witch in the wardrobe" to come back at them in a big way, especially when they are at their most vulnerable, due to having undergone their transplant in their district and being in urgent need of good medical nursing-care (and there might be probably no chance to have a witness 24/7) ... Perhaps that might also be the reason, why she (if it is her, but I am pretty sure it is her) is still so prominently in place in the district and, I have already noticed, that she rather specializes in compos mentis (of sound mind) ESRF-patients who try very hard to be as fit as possible for their transplant. She leaves the "stretcher-cases", who are not on the transplant-waiting-list alone, since most of them would probably not even comprehend what she means in her carefully thought out and carefully fine-tuned wickedness...

[Simon Dog]

The legalities may be a bit different in England, however, here in the US the keywords would be "I am revoking consent for this treatment, take me off now" would get their attention.

The problem with taking yourself off without stopping the machine and flushing back your blood is that you are going to drop your hgb/crit when you are probably already a bit anemic from renal disease.

[kristina]

The legalities may be a bit different in England, however, here in the US the keywords would be "I am revoking consent for this treatment, take me off now" would get their attention.

The problem with taking yourself off without stopping the machine and flushing back your blood is that you are going to drop your hgb/crit when you are probably already a bit anemic from renal disease.

Good point Simon, but I am still left wondering what precisely it was that brought DeadAlive to feel so bad, sweating, being sick etc.? Could it have been connected to the "wicked witch" and what she might have done to him, something that only experienced & trained dialysis-employees could possibly know about ?? After all, as he tells us : his head was pounding, veins popping out of the sides of his head. He was bright red sweating with hot flushes and he started being sick which led to him getting cramps in his neck and stomach before taking himself off the dialysis machine in total desperation ...

[Charlie B53]

..............., as he tells us : his head was pounding, veins popping out of the sides of his head. He was bright red sweating with hot flushes and he started being sick which led to him getting cramps in his neck and stomach before taking himself off the dialysis machine in total desperation ...

It is way too late now but an immediate trip to the ER for blood tests, weight check, etc., may have been able to prove either too much water taken off too fast, or possibly even an injection of something he shouldn't have had.

This could easily have been a bad reaction to something.  Figuring out what could be very difficult.  Thus the reason for immediate action if anything like this ever happens.